December 8, 2025 • 58 mins
A candid conversation with Connie Montgomery charts a lifetime of being dismissed, the car accident that unlocked a Factor VII diagnosis, and the fight to secure prophylaxis. We spotlight bias, culture, and the power of narrative medicine to change outcomes for women with bleeding disorders.
• Growing up with unexplained bruising and nosebleeds
• Gullah Geechee cultural privacy and silence
• Repeated dismissal by clinicians and loss of trust
• Heavy menstrual bleeding through two pregnancies
• Diagnosis after an ER doctor listened and consulted
• Phenotype over lab numbers in rare bleeding care
• Securing prophylaxis and navigating insurance barriers
• Building trust and health literacy with care teams
• Organizing patient power and industry accountability
• Compassion that moves beyond empathy into action
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
SPEAKER_02 (00:00):
Welcome to the Hope Podcast.
My name is Jonathan James, andI'll be your host today to talk
more about women with bleedingdisorders.
In this episode, I have a dearfriend who's joining me today to
talk more about her experienceas a woman living with a
bleeding disorder, ConnieMontgomery, Factor VII
deficiency with so manychallenges throughout her
lifetime, and excited to unpackthis conversation with you
(00:21):
today.
I want to say a special thankyou to our episode sponsor,
Janintec, for sponsoring thisepisode.
Welcome to the Hope Podcast.
My name is Jonathan James, andI'm excited to have a special
interview with a special guest,Connie Montgomery.
It is so great to see you today.
(00:42):
Thank you so much for joining mefor the Hope Podcast.
SPEAKER_04 (00:45):
Thank you so much, Jonathan, for having me here
today.
I'm very excited about this timeand us having a chance to talk a
little bit about my journey inbleeding disorders.
SPEAKER_02 (00:54):
Yeah.
You know, I've been lookingforward to this conversation for
a long time.
We have a very close mutualfriend, Debbie De La Riva, who
has introduced us.
And I'm just so thrilled just tounderstand more of your
background and your story.
And I've been looking forward tothis conversation for a long
time.
And so uh you have so manyunique twists and turns in your
story and so many things thatyou've overcome, and so much
(01:15):
depth to what you've learned andhow you've been equipped and
really just the warrior that youare for yourself, but also
championing for others becauseyou've empowered so many people.
And so just for people who arelistening that may not know you
like I do, or maybe nearly aswell as Debbie does, I'd love to
know a little bit more aboutwhere you're from and how you're
(01:36):
affected by bleeding disorder,and then we'll just kind of dive
into your story from there.
So why don't you tell us whereyou're from and how you're
affected by bleeding disorder?
SPEAKER_04 (01:44):
Absolutely, Jonathan.
I'd like to share with you I amfrom a small town called Pauli's
Island, South Carolina.
It's the southeastern part ofthe United States.
Um, absolutely love being aSouth Carolina young lady.
And um I'm married and I havetwo adult children, and I am in
the bleeding disorderscommunity, and I have factor
(02:05):
seven deficiency.
And um, I was diagnosed withfactor seven deficiency much
later in life, like many women.
I was in my mid-30s when I gotdiagnosed.
SPEAKER_02 (02:17):
Wow.
Wow, I there's so much to unpackin this world.
It's so you are a rare jewel inmany, many ways.
We just recently had an articlethat we published about your
story in the Hope Factormagazine.
So I know a lot of people arereading that and getting really
to know your journey a littlebit more.
But this conversation really isexciting because we can dive
deeper into some of yourbackground and some of the some
(02:40):
of the challenges that you face.
But I, you know, starting outjust kind of at the beginning,
you know, when when as a littlegirl on your journey, did you
have any suspicions that you hada bleeding disorder early on?
And and what was it like growingup?
SPEAKER_04 (02:57):
Well, growing up in rural South Carolina was really
different for me, and it wasinteresting because we were very
active people.
We did a lot of outsideactivities.
Um, there was, of course,gardening and that type thing,
um, and running around playingand having hopscotch and playing
jack stones and pickup sticksand all those type things that
little girls did back then.
(03:19):
Uh, a lot of the activity wasoutside.
It was engaging with just whatwas around you and playing with
cousins and this type thing.
Um, but I knew something was alittle different about me
because of the bruising, thespontaneous bruising.
Um, I'm a brown person, a blackindividual, identify with a
black diaspora, AfricanAmerican.
(03:39):
However, I would always havethese black and blue spots on me
that were purple like that wouldjust pop up spontaneous, seemed
like to me, um, in variousplaces on my body.
And I'd wake up that way.
And then sometimes I'd wake upand there would be uh blood on
my pillow, and I couldn't quite,I didn't quite understand that.
(04:00):
But it wasn't until my pubescentand preteen years that um things
started to uh just spiral and godownhill faster.
And so having a conversationwith my mother, she and I,
though mother was gulagy, and inthe gulla geechee, uh geezy
culture, we don't believe insharing family business out into
(04:21):
the world.
But we knew that we had to getsome help from myself.
So mom and I um made doctor'sappointment, went to the doctor,
shared what was happening withme, the bleeding spots on my
pillows, the long nosebleedsthat lasted for 10 to 15
minutes, the spontaneousbruising, all of that we shared,
um the swollen joints, the soreand painful joints, we shared
(04:44):
all that information and weretold that, you know, they
thought we were exaggeratingabout the condition.
It couldn't possibly be thatbad.
I was making up those symptoms.
They didn't believe us,dismissed us, and uh that just
left a very bad taste in mymouth for healthcare and
healthcare practitioners.
So for quite some time,Jonathan, I put on the back
(05:05):
burner my health and uh myhealth journey, and I just coped
and dealt with it as did mymother, the best that we could
by taking care of myself andourselves in the home.
And um that's what we did.
I packed the extra clothing thatyou pack when going to school.
I didn't get to participate in alot of the outside activities
(05:28):
like a lot of my preteens andteenage friends did, and
absolutely no sleepovers um thatI have with my girlfriends, like
the slumber sleepovers thatgirls had a lot back then.
Didn't have any opportunity forthat type thing because I would
bleed through my clothing and uhhave to change clothing and
garments frequently.
So went through a lot of that,and that made my teen years a
(05:51):
bit difficult uh to navigate,but I was always prepared,
always cared a satchel withextra clothing.
SPEAKER_02 (05:58):
Wow.
You had to be because you justknew that there was a
possibility that could happen atany time.
Tell me about your familydynamics.
You have siblings?
SPEAKER_04 (06:07):
Yes, I do.
Um, I was number three of thefour girls um before my mother
adopted my youngest brother inher later stages of life.
Um, and with three girls, um,Brenda being the youngest, four
total, um, that was kind of hardon mother because she was
married for 14 years.
(06:28):
And after uh mother got adivorce um from dad, with him
taking a job due to his um loweducational level, he worked on
the road quite a bit.
And so um their marriagesuffered at the cost of this.
And so after 14 years ofmarriage, they got a divorce,
and mother was left to raise herfour girls.
And I did not want to add orcontribute to the stresses.
(06:51):
I was smart enough to know that,even young, uh, that my mother
had by always complaining withmy health issues.
So that's another reason, too.
I put some of the health uh uhissues that I was struggling
with with the bleeding disorderon the back burner with the
noseblees.
I just tried to deal with it.
I'd go to school sometimes,Jonathan, and my nose would just
pour, poor, poor blood.
(07:12):
And I would use all the tissue,the paper towel, everything that
was in the bathroom to try tomanage it to the point where um
I'd be missing a good bit of theinstructional time in class.
And I just try to clean upeverything in the bathroom and
just return to class like, youknow, there was no problem.
And I always had the extrachange of clothes in my satchel
so I could change um and put ona different top if I needed to.
(07:34):
But it made things kind oftough.
But I felt like mother hadenough she was dealing with,
trying to raise four girls onher own, even with her limited
educational level.
So I didn't add any additionalstress to mother.
She was keeping uh care of ourhousehold, she was taking care
of me and my sisters, and shewas working two to three jobs
always.
So that was enough for oneperson to deal with, I felt.
SPEAKER_02 (07:59):
Did the did your other siblings have any symptoms
that they displayed or any otherfamily members beyond even just
your immediate family that haveany symptoms?
SPEAKER_04 (08:08):
Well, like I said, my mother's Gulagie, and a lot
of times in the Gulagsi culture,we don't always talk about,
right?
Um, what's going on with youmedically?
We are resilient, a proudpeople.
So we just cope and we deal andwe handle the best we can
whatever situation we findourselves in.
(08:31):
Even amongst ourselves, uh,there wasn't a whole lot of
conversation about it.
But I do remember hearing uhsome of the great aunts talking
about free bleeder syndrome.
Free bleeder syndrome.
Later in life, I learned thatthat free bleeder syndrome was a
part of this bleeding disordersituation that I ended up with.
(08:54):
And I have a younger siblingwhose child was born.
Um, and he, her son, presentedwith a bleeding disorder.
And that started to open up thedoors, yet we still didn't talk
much about it amongst ourselves.
SPEAKER_01 (09:11):
Yeah.
SPEAKER_04 (09:11):
And definitely not to others until we were
desperate and needed the help.
And then we were dismissed byhealthcare professionals and
clinicians.
And that just set up a level ofum feelings for myself that uh I
wanted healthcare to lookdifferently for other people.
And so later in life, I decidedto become a healthcare
(09:33):
practitioner, an occupationaltherapist to be exact, so that
no one else I thought that uh Iwould have the opportunity to
work with would feel the waythat I felt, which was
dismissed, unheard, and unseen.
SPEAKER_02 (09:47):
There's so much to unpack with that because I feel
like that it there's you had itwas the perfect storm in so many
ways, right?
You had a lot of dynamics goingon there that was suppressing um
your ability to ask questions toprofessionals, to be able to
seek for a fair response fromprofessionals.
(10:10):
Um being in the deep south, Ican't help but think that you
had some discrimination issuesduring the timeline that you
were growing up as well.
Like, how did that impact yourability to to communicate and
even expect in interaction?
I mean, your family dynamicalone is like we don't talk
about this.
I mean, who who are you supposedto turn to?
How how do you even cross thatbridge?
SPEAKER_04 (10:32):
Well, for me, um, my faith played a huge part in how
I was able to navigate and moveforward, even as a teen, you
know.
Um, I spent time um talking tothe Lord, praying and reading my
Bible, and that helped menavigate and get through some of
it.
But to tell you the truth, Iwish at that time there were um
(10:56):
another outlet for me.
And I really do wish thathealthcare practitioners and
clinicians at that time listenedto what my mother was saying and
listened to what I was saying.
Because within myself, that setup a feeling of uncertainty that
though these people are supposedto be professionals, you're not
(11:20):
even listening to what I'msharing with you, and I'm
directly in front of you sayingwhat's going on.
My mother's saying what's goingon, and you're not hearing me.
So that right there made mequestion their ability, even
later in life, to be the type ofprofessionals in healthcare.
In healthcare, you're supposedto care.
(11:41):
And I wasn't experiencing thator seeing that, nor did my
mother.
So I thought, yeah, healthcareis where I want to go.
That's the type of work I wantto do.
And I don't want anybody elsewho would need my services as
occupational therapist to everfeel that way.
Um, but more importantly, Ithink for me, what it did was it
gave me an open window, firstjust first rate view of health
(12:09):
and health disparities in thiscountry.
Because I have to be honest,being a black woman in the
South, not feeling seen orheard, also being someone from
the Gulagie culture, knowing,knowing the atrocities of the
(12:31):
enslaved, because I'm GullaGeechee.
My family came forcibly to theUnited States.
Um, we knew that prejudice andbias was there and is here
still, but to experience it inthat way in the healthcare
setting was not a goodexperience.
Because, you know, we heard thestories.
(12:52):
I heard the stories as a childgrowing up, you know, about, you
know, our first medicalexperiences being on the slavery
auction block in Charleston,which happens to be about 72
miles from where I currentlylive.
But it's one thing to hear aboutit being experienced from your
ancestors and those older thanyou, and then experiencing it in
(13:13):
modern day time yourself, goingto the doctor, knowing
something's wrong with you,bleeding for 10 to 12 days with
your menstrual cycle, havingextreme menoragia, passing huge
clots and telling this tosomebody, being vulnerable
enough to open up and share thiswith somebody, and then being
totally dismissed and saying,no, no, that's that's that's not
(13:34):
what you're experiencing.
You're exaggerating about that.
That's not happening to you.
And no father, no father workupassessment evaluation being
done.
Uh it just felt inhumane.
SPEAKER_02 (13:50):
I can't even imagine.
I'm so sorry.
Thank you, Jonathan.
I know that that's part of whatfuels so much of your passion is
not wanting others to experiencewhat you went through.
And it's it's one of the thingsthat I think that you know is
hard for people to understandthat haven't gone through that.
(14:11):
I mean, I you know, I think Ithink that there's there's a
certain measure of dismissalthat anybody with a rare disease
or or or even an invisibledisease understands.
But the compounding, I can'tthink of I I just it just seems
so overwhelming to me to thinkabout just in every sense of uh
(14:34):
and everywhere you turn thatpeople are just completely
dismissing what you've beenthrough.
We know that women with bleedingdisorders in general, the I used
to say the science hasn't caughtup, but that's actually not
true.
The science has been there for along time.
And um, but I think about thatin the context of what you
shared about discrimination,even in this country.
It was a hundred years plus,maybe two hundred years before
(14:56):
we started to really get to apoint where there's some sense
of like, okay, why are we stillhaving like why are we still
treating people inhumane?
You know, there's a sense ofequality that is we should see
each other as human.
We should see each other as asas the same.
And I don't understand, youknow, uh, I don't understand
what that's like.
I I it's it's remiss if I don'tsay, I mean, I'm a middle-aged
(15:20):
white guy, right?
I can't get around that, youknow.
And so, and and and so all I cando is try to is try to imagine
what that was like.
And and with the few things thatI've experienced in my life,
it's been a small, tinyfraction.
And so the fact that that you'vebeen able to push through and
overcome over and over and overand over again in all of these
(15:44):
hurdles, you have had everythingagainst you.
I I can only imagine, you saidit at the beginning, your faith
is what helps you to pushthrough that.
I I I it but it's also yourinternal fortitude, your your
endurance, your your passion forothers, um, all of those things.
It it just it it you know it'sgotta be the compounding nature
(16:07):
of all of your resilience toothat has helped you to continue
to push through all of thosethings.
And I see that in in not justyour life story, but I can
imagine you were you were thatway even as a teenage girl
pushing through because youweren't gonna take no for an
answer no matter what.
You were just gonna live throughit.
SPEAKER_04 (16:26):
Thank you so much for saying that.
Um I think when life people thathave challenges and adversities,
we have to validate theuncomfortable feelings that
those challenges and adversitygive us.
But Jonathan, I don't think wecan lay there.
We can't stay there.
(16:46):
We must we must give peoplegrace express what it is we feel
the best we can, right?
And then find solution andstrategy, hopefully, to make
things better.
Which is exactly what I feellike we are doing here, even
(17:07):
with this podcast.
Yes, opening up and beingvulnerable like this for me is
not easy.
First of all, based on myupbringing and the way I was
reared, but it is necessarybecause I want no other little
girl in this country or woman orteen or person to feel the way
(17:31):
that I was made to feel.
I I I don't want that for anyoneelse, you know?
And so if hopefully my story isout here and I get an
opportunity to share it far andwide, people will think deeply
and think long about the personsitting in front of them and
(17:54):
treat them with compassion.
SPEAKER_02 (17:56):
It's so good.
It's so good.
It's the only way that weprogress in humanity, right?
Is that it starts withlistening.
And um that's why I love yourstory.
There's so many parts of yourstory I want to get into.
But let's we kind of left atteenager years, right?
(18:16):
And so it was another quite awhile.
I mean, 35 is when you werediagnosed officially.
So let's talk about goingthrough the end of high school,
getting into college.
What was that like?
I mean, you're still dealingwith all these symptoms.
Are you still asking the doctorsthe question, or have you given
(18:38):
up on professionals being ableto help you at any capacity at
this point?
SPEAKER_04 (18:43):
Because I decided to go to a local college after high
school, I went to Francis MarionCollege, now Francis Marion
University, and I studied thereto get all my prerequisites to
be accepted into the MedicalUniversity of South Carolina so
that I could become anoccupational therapist.
I knew, because my mom was asingle parent, I had many
(19:06):
factors or competing interestsat the time.
I knew I was going to have tobalance whatever was going on
with me because I still didn'thave a diagnosis, whatever was
going on with my health and thebleeding issues, work and go to
college.
So what I did was in the oneplace I did not want to go, I
(19:26):
went there to be a helper.
I worked at a local hospital.
I worked at McLeod Hospital inFlorence, South Carolina, in the
SICU as a ward clerk while, andat Sears part-time on the
weekend, while going to collegeat Francis Marion and trying to
manage my bleeding disorder.
So with having the jobs, thebleeding issue, and going to
(19:51):
college, four-year college toget my prereqs so I could get
into Medical University of SouthCarolina to get in the
occupational therapy schoolprogram, it was a true balance.
And making certain that I didn'tmiss too many days out of
college and class work so that Icould keep up and stay on top of
my studies so that I wouldgraduate on time, that was a
(20:14):
balancing act.
I bet.
That was a balancing act.
But I knew after doing it that Icould do it if I push forward
and have the support system ofat that time my sweetheart, who
became my husband my sophomoreyear in college.
I got married a sophomore yearin college, and he supported and
(20:38):
helped me greatly so that Icould finish college and manage
having a bleeding disorder, eventhough it was undiagnosed at the
time, by going to doctors'visits and talking to them and
telling them, okay, I think Ineed help here.
I think it was my sophomore yearin Beaufort, South Carolina,
(21:01):
when I went down to visit him.
And I went for just a regular, aroutine check of uh OBGYN visit.
And the doctor just said to mehere again, I think you're lying
about all of this straight to myface.
I don't believe this ishappening to you.
And I did not go back to anotherphysician for the next, I think,
(21:23):
three years after that.
I just coped the best that Icould until I finally graduated
in 1993 from the MedicalUniversity of South Carolina.
SPEAKER_02 (21:33):
Oh my God.
SPEAKER_04 (21:34):
Um wow.
But I was newly married, I'llnever forget it.
It was 1990.
I was newly married when I wentto see him.
And I just wanted to makecertain everything was in order
and things were okay and that uhhe would consider hearing my
symptoms and possibly do anassessment and evaluation and
look farther into what washappening to me.
(21:56):
But uh that wasn't the case.
But after that doctor turned medown, my husband was stationed
at the Marine Corps Air Stationin Beauford, and so that's why I
went to the OBGYN down there.
I didn't go back for threeyears.
But I say that to say all ofthis.
You know, one interaction youhave with a person, you don't
know how long and how far thatinteraction could go.
(22:18):
Um so for three years afterthat, just for a random teeth
cleaning, I did not go.
Um I it I just shun healthcareprofessionals from that point
on, even though I was in collegetrying to become a healthcare
professional.
I put my own health on the backburner or not even on the stove.
(22:38):
Um and I don't recommend that.
I do not recommend that.
Um I hope that someone in thesame position would go and try
and get care, get a secondopinion, a third, a fourth.
That's why I so stronglyadvocate now for women and for
uh girls with health careissues, be it a bleeding
(23:00):
disorder or a chronic healthissue.
Go to someone else.
Go and speak your truth untilyou are heard.
Share your symptomology,regardless of what the other
clinician or the person on theother side of the table tells
you.
SPEAKER_02 (23:16):
Yes, that's so good.
So good.
There, I I again just, you know,I I'm even thinking about three
years.
I don't even know how you goback, even after three years.
I mean, that just shows againyour your you know, fortitude to
say, you know what, at somepoint I'm gonna, I'm gonna get,
(23:36):
I'm gonna step back into thering.
And of course, at this time,there's no Google, there's no
like WebMD to like searcharound, or it's really probably
pretty frail at this point, evento be able to do your own
research, right?
SPEAKER_04 (23:48):
Right.
But the beginnings of that wasstarting, but even with that,
um, it gets worse because theonly reason I returned to the
doctor is because I'm bleedingand I'm bleeding a lot, and I
don't know what's going on.
And this bleeding has taken upfrom the 10 to 12 days of a
menses to at least half a monthnow, and I something's not
(24:10):
right.
So when I go back, I go back tosee an OBGY-in in Florence,
South Carolina, and I learnedthat I'm expecting a little one.
Um, but this is shocking to mebecause how can I be expecting a
baby and I'm continuouslybleeding?
Um, but certainly it ishappening.
And um, when I went back waswhen I had to go back because
(24:35):
the pain was so bad and thebleeding had uptake.
Wow.
But even worse atrocity happenedto me because I learned that I
was expecting that little one,and he was born January of 1994.
But during the entiregestational period, during my
(24:56):
entire pregnancy, I bled everymonth, and uh it was extremely
hard.
It was just a nightmare of apregnancy.
I was always anemic, I wasalways tired, and uh still no
further tests or anything wereran or done.
And uh even when I changed OBGYNdoctors three and a half years
(25:16):
later, when I got pregnant withmy second child, which was 97,
very similar occurrence, and Iwent from a male doctor the
first time I had my first babyin 94 to a female doctor when I
had my baby in 97.
And it was just blatantdisregard for the things I was
sharing, and by that time I'dbecome a healthcare professional
(25:38):
myself, and I knew, I knew I hadto do something different.
SPEAKER_02 (25:43):
Oh my gosh.
So, so walk me through how is itthat you eventually find out
that you're diagnosed?
I mean, how do you how do youget to a diagnosis?
SPEAKER_04 (25:55):
A car accident en route to Charleston, South
Carolina leaves me in a canalditch with the front of the car,
neck and neck, with a hugeconcrete um boulder that was in
that ditch.
But the blessing of that caraccident opened the door and the
(26:18):
windows to what was going onwith me all of my life.
It was a knowledgeable ERdoctor, Dr.
Richmond.
I'll never forget him, you'llforget him.
He graduated from Richmond.
Richmond, the Medical College ofVirginia in Richmond.
(26:39):
That man was a blessingunbelievable.
After looking at my labs in theER and seeing that the bleeding
wouldn't stop, he made aconsultative call to a
hematologist.
And between the two of them andweeks in the hospital, them
going back and forth looking atthe test, they were like, this
is congenital factor 7deficiency.
SPEAKER_03 (27:01):
Wow.
SPEAKER_04 (27:02):
She was born with factor 7.
In the emergency room.
I learned that being in thehospital because once I was in
that emergency room, he placedme in the hospital until all
those tests, until all thoseconsultations were done with
that hematologist.
Wow.
So Dr.
Richman and that hematologistreally blessed me because they
(27:25):
gave me answers that I had beenlooking for for years.
SPEAKER_02 (27:29):
And what really should have been a tragedy that
many people most likely wouldhave died from even in the car
accident, here it becomesliterally a turning point for
your the window to your futureand solutions, right?
SPEAKER_04 (27:42):
Well, the thing is, I almost died having the two
children, so I had emergencyC-sections.
My children didn't come hereeasily.
My story is hard.
Um I almost died having both ofthem.
But they made it and I made it.
Never had a blood transfusioneither.
Just went home sick, and whenyou see a black person turn
(28:03):
gray, they're about at thegrave.
And um that's about what I looklike.
Pretty gone.
But I made it through thoseyears and I made it through that
time.
But I think I've made it throughall of that for this very moment
and the moments that I'm livingnow, where I get to tell and
share my story.
Hopefully, hopefully, thiscountry and so many others that
(28:27):
struggle with health disparitiesand gaps will hear my story.
And healthcare practitioners andclinicians and even family
members will hear, listen, andhear people's stories and hear
their symptoms and do somethingabout it.
SPEAKER_02 (28:44):
Yes.
You go from from this caraccident, getting diagnosed,
getting solutions.
Does that lead to treatmentright away?
SPEAKER_04 (28:56):
No, that does not lead to treatment right away.
Because I go and see a malehematologist, and this male
hematologist, at therecommendations from the
hematologist that consulted withDr.
Richmond, the ER doctor, tellsyou you might want to do some
further testing, look closely,and see if this individual would
(29:19):
qualify for prophylactictreatment.
Well, the first hematologist didnot believe that uh that was
necessary and that I needed thatbased on my lab work only,
wasn't listening to what I wassaying.
And see, a lot of times withyour factor 7 patients, the
(29:40):
levels may look different fromthe symptomology, which is what
the patient or the person isexperiencing.
Right.
I think sometimes our cliniciansand our healthcare
practitioners, even myself beinga healthcare practitioner, uh,
we don't really dial in and tuneinto what the patient or what
the person right there in frontof us is saying.
(30:01):
But if we do more of that, thatwould help with better patient
outcomes and better overalloutcomes for caring for people.
SPEAKER_02 (30:14):
One of the things that I think is interesting is
that you're hearing more talkthese days about phenotyping.
Obviously, genotyping is soimportant with genetic
mutations, but phenotypingessentially is just how it
impacts you, right?
It's your story.
And and I encourage womenoftentimes, like, man, utilize
you gotta speak in a languagethat even the healthcare
(30:36):
provider can understandsometimes.
You know, you're I had a friendof mine who's a physician that
says, she always says, you know,that at the core and the heart
of every physician is ascientist who's living inside.
And sometimes you gotta kind ofintrigue the scientist inside of
them to make them start thinkingand and and trying to
investigate, right?
Yeah.
(30:56):
Um, I I heard a an old doctorwho who is about 85 years old.
His son was going throughmedical school and he gave his
son this advice.
He said, he said, diagnosis intoday's medical practice is a
lost art.
And he said, if you will justutilize your, he's you're gonna
have to self-educate becausethey won't teach you in this in
school.
He said, but he said, heencouraged his son.
(31:19):
He says, you need to learn theart of diagnosis.
And it starts with listening.
And I think that that, you know,uh sometimes using that kind of
framework to be able to say,hey, I'm having these symptoms,
but my phenotype is, and thenyou start to express what your
experiences can be quitecomplex.
(31:41):
And I understand in in factorseven deficiency, especially,
you mentioned it kind ofbriefly, but there is a real it
is a there's a lack of educationfor many hematologists, even not
I'm not specifically speaking toHTC specialists, but hematology
oncology as a broader specialty,if you will.
There's a huge misunderstandingabout women with bleeding
(32:03):
disorders in general, but factorseven is extra complicated in
the sense that, like you said,the factor, the actual protein
levels themselves don't reallytell much to the story.
It it could, but it might not.
It really has a lot to do withthat that lived experience,
right?
SPEAKER_04 (32:18):
And you need to really listen and dial into what
that piece of the puzzle is inthe clinic.
You need to hear out what thatpatient is saying to you because
as you hear it, then you canstart to put the pieces of the
puzzle together.
But you cannot omit any part ofwhat is being spoken to you.
Just looking at the labs or justremembering what you read in a
(32:40):
book.
You need so much more than that.
Um, but I'd also like to say, Ithink um in this country.
Now I'm talking a little bit tomy clinician, professionals, and
others that like myself, alsowho've gone to medical school.
I think we need to have a lotmore narrative education.
(33:04):
And some of our classes in theseuniversities and college and
collegiate settings, we need tohave patients with various
conditions come in and educateus about what their conditions
look like, as opposed to justwhat we've read in a book.
Because when we do more of that,then we get to a fuller picture
(33:28):
of what these various diagnosestruly look like.
SPEAKER_02 (33:33):
It even applies to treatment, right?
Because even once you start atreatment path, just because it
says it on the label doesn'tmean that that's what you're
gonna actually see occur inevery single instance of every
single person.
Every person's gonna interpretthat treatment even a little bit
differently, right?
Because we're all differentpeople.
SPEAKER_04 (33:51):
Yes.
We're different.
We're a diverse population.
And so based on certain people'scultures, lifestyle, and let's
even go there, their healthliteracy, what they're able to
understand, all of that is goingto affect whatever treatment
they get.
The only way you know that ishaving a conversation with that
(34:13):
individual, spending time withthem, getting to learn and know
about them and their habits andhow it impacts the medical
intervention that you'rerecommending.
SPEAKER_02 (34:21):
So good.
I just while we're talking toclinicians, this is I I had a
nurse care coordinator at atreatment center one time tell
me this story, and I thought itwas so wild, I did not even
think or consider that thiscould happen.
But again, to speak to healthliteracy, um, there was this
patient that they were giving,and he was treating
prophylactically on a regimen,and he was having bleeds just
(34:43):
all the time, and and theycouldn't figure out what was
going on.
He was like, Man, you're takingyour medicine, right?
Yeah, here's my my logs, here'swhat I'm doing, all this stuff.
Come to find out, they werelike, okay, she eventually
intuitively this goes on foryears, and intuitively she says,
Look, can you just come into theclinic and I want to watch you
infuse?
This is just visual observation.
(35:03):
Now, this kid's gone to camp andhe's a young adult now, he's
doing all this stuff on his own.
He comes in from clinic, intoclinic, he gets ready, mixes up
his medication, he goes toinfuse.
He wasn't getting it in a vein.
Now, you tell me who would havethought, number one, to ask that
(35:26):
person if he was even getting avein.
I don't think he even knew thatwhat he was doing with the
administration of it the thepoint is is that sometimes the
the to exactly what you said, itis a combination of observation,
asking more questions, listeningmore, but also sometimes it's
just are they interpreting whatyou're trying to educate them
(35:49):
with?
You don't even know that untilyou actually have that level of
observation, right?
SPEAKER_04 (35:56):
And to have that level of observation and even
that level of communication,there has to be some type of
trust built between the two ofyou.
It has to be more than just atransactional connection, it has
to be a relationship thathappens between the
conversations that you all havewhere that person feels like I
(36:18):
can open up and give you theinsights.
SPEAKER_02 (36:20):
Creating a safe space.
SPEAKER_04 (36:21):
All right.
Right?
SPEAKER_02 (36:22):
You've got it.
That's that's the thing, is thatI think so often one of the
things that we do once once youdo find treatment and you find a
trusted care team, I think evenas a person who has felt like,
and I and I look, I recognizethat in my experience it's a
tiny minute fraction of whatyou've experienced in terms of
(36:44):
not feeling heard.
But even in the little bit thatI've experienced in that,
there's a tendency for me towithhold information.
I just want to get through andgo through the motions and do my
deed and just get in and out ofmy annual visit and be done with
it.
But I've learned actually, Ihave four kids and two of my
kids are girls, and they bothhave they've been uh, you know,
(37:06):
we're we're we moved away fromthis obligate carrier language,
and now we're talking about,okay, they are affected and they
need treatment.
And so in the process oflearning, even for me to help
them through this journey, oneof the things that I've learned
is that I've got to, I have aresponsibility also to be
vulnerable, to be transparent,and to come prepared to this
(37:29):
appointment, to actually behonest and say what's really
going on.
Because, you know, so much we wehave this, I think as patients
too, like we expect thephysician to come to our side of
the table, but sometimes thepatient can only help make
recommendations or evaluationsbased upon what the patient
gives them to work with.
(37:49):
And so we can get in our own waysometimes, too, can't we?
SPEAKER_04 (37:54):
So we have to open up.
We have to completely open up,like you said, and be
transparent, be honest, andshare those tough things to
share.
We have to just say it.
I think that's so important withgoing forward with treatment.
That's so important with goingforward with most relationships
(38:14):
and partnerships you have inlife.
Don't start me, John.
It's it's it's being open, it'sbeing honest.
SPEAKER_02 (38:22):
Have you stayed married for 35 years?
SPEAKER_04 (38:24):
You gotta be honest.
Yes, yesterday was ouranniversary.
We were married 35 years.
And that is the only way, thankyou.
That is the only way you can dothat, is to be open and to be
honest.
But I have to tell you this fourout of four people in my
immediate family have a bleedingdisorder.
(38:47):
My husband was 49 when helearned he had factor five
lighting.
I was in my mid-30s.
My children are blessed to knowbecause we went through genetic
testing.
If we had not had thatopportunity, then I'm afraid
they would have been like theirparents.
(39:09):
If they lived far down the roadlearning they had a rare
bleeding disorder.
Now, the thing with that is, isin a country where there's so
much resource, that should notbe.
For our women who are diagnosedin this country, on an average,
not giving a specific diagnosis,whether it's Bon Willebrands or
(39:31):
whether it's um factor seven orwhether it's uh hemophilia eight
or nine, not giving thespecific.
But on average, women are notdiagnosed until 16 years out.
It was double the time formyself based on so many other
things I told you that I thinkcontributed to that.
That should not be.
SPEAKER_02 (39:52):
That's right.
SPEAKER_04 (39:53):
So every year I go to the HFM conference for women
and teen girls in this nation.
And I speak and I advocate and Ishare with those ladies how
important it is for them toadvocate for themselves.
We can't be the mothers of thesesons, the wives of these
husbands and all of that andthese teens and not ourselves.
(40:16):
That's right.
Something going on in our body.
And no matter how many times thepeople tell you no, like they
told me no, I was making it up,I was dismissed, it was not
true, it was not so, that wasnot happening to me.
You go back and you tell them,yes, it is, and you keep finding
a new clinician or anotherperson to tell until someone is
(40:36):
willing to help you helpyourself.
I'm passionate about thatbecause of my life experience.
But I would not be on thetrajectory I'm on had not I
learned I had a bleedingdisorder in my mid-30s.
And I would not be the globalpatient advocate I am now.
Traveling all over the world inSeptember, I'll be speaking in
(40:58):
uh Lisbon, Portugal at a healthequity conference.
And then after that, I'll bespeaking at uh in the London at
I think it's called the BHAHouse to the Lords of Parliament
and other individuals.
It's so important that we hearpeople when they tell us that
there are gaps in the healthcare system, regardless of what
(41:18):
country you lived in.
That's right.
It's so important that we meettheir needs with the social
determinants of health so theycan access care.
Yes.
SPEAKER_02 (41:28):
Yes.
SPEAKER_04 (41:29):
This is a part of our health journey.
One can't have a good quality oflife without health care.
SPEAKER_02 (41:40):
That's right.
SPEAKER_04 (41:41):
And to have health care, you have to care.
It has to be compassion.
SPEAKER_02 (41:46):
That's so good.
That's so good.
Oh, Connie.
So much to unpack there.
I want to talk about yourtreatment because at a certain
point, you start to get to aplace where in your own journey
of this, you start to get to aplace where you are able to
access treatment.
SPEAKER_04 (42:05):
Yep.
SPEAKER_02 (42:05):
How how did that change your life?
SPEAKER_04 (42:08):
That changed the game because I had the first
male doctor, like I told you,didn't think that uh
prophylactis treatment wassomething that I needed, but I
knew that it was.
And so I had to go on and findanother hematologist that
understood my symptomology,understood my needs, and
understood that, okay, she'sgoing to need this script for
(42:29):
prophylactic treatment so thatshe can get the medicine she
needs so she can have a betterquality of life.
And that took place.
But it was not without an uphillbattle in advocating for myself.
But I'm so glad, so thankful,and so grateful that I did
because I think it wasnecessary.
SPEAKER_02 (42:51):
Did you have challenges with insurance
pushing back?
SPEAKER_04 (42:54):
Did you have challenges with the first level
of challenge came from theactual hematologist, the doctor
that I saw, and then I had to goand find a new one.
Then the next challenge camefrom who would allow patients'
assistance programs to help meat that time in 2015 when I
(43:14):
needed dire help with paying formy medication.
And I was the type of person, Iam the type of person, that I'm
gonna get the insurance companyon the phone, the benefits
coordinator for the individualswhere I'm gonna get the
medication for on the phone, andI'm gonna get, because my
(43:37):
husband is a veteran, theveterans benefits administrator
on the phone.
But I know how to access and dothat.
Not everybody knows how to dothat, but they still deserve
access to insurance and care.
But after getting all theseindividuals on the phone and
making certain that all thediagnostic codes and everything
was in that needed to be, and mymedical necessity statements
(43:58):
were in, I was able to accessthe medication that I need.
Wow.
And they were able to allowcharitable organizations to be
charitable so that I could getthe medication.
Because when you're talkingabout medication that's$300,000
a year, I don't have that out ofpocket cost, and I don't know
that many people that do.
Right.
(44:18):
So the assistance was necessary.
SPEAKER_02 (44:21):
Wow.
And that's that's its own.
I mean, this is so many thingsto talk about within the the
scope of being able to justaccess medication in general for
high cost medications.
And the fact that you had to beable to coordinate all of that,
you have to really become thisis when we talk about being your
own advocate, you really have toeducate yourself on something
(44:44):
that most of us were not trainedto do.
We weren't prepared for this.
And so it's like, how do you,how do you, you know, I mean I
love your I love your example ofjust getting everybody on the
phone at the same time.
We're gonna do the what do theycall it, a party line when we're
you know, it's like you know,it's like get everybody on
there.
(45:04):
And and uh, you know, I heardsomebody say one time that, you
know, the best way to to uh toto act, you know, to get
something to be done is to actwith a lot of confidence and act
like you know what you'retalking about.
By the time they figure out thatyou don't know what you're
talking about, they're gonna bealready in motion so much so
they just want to get it done,you know.
So there's a certain measure ofthat confidence that you have
(45:24):
that I'm sure you were justlike, we're gonna do this and
we're gonna be a team and we'regonna make it work, right?
SPEAKER_04 (45:30):
Exactly.
Our health depends on it, youknow.
As people living with bleedingdisorders, we can't afford to do
life almost any other way,really.
SPEAKER_02 (45:40):
That's so true.
SPEAKER_04 (45:41):
Have a good quality of life.
We cannot.
SPEAKER_02 (45:43):
You know, you mentioned earlier about being a
global advocate, and you are, ifI've ever seen one, you have
spoken at uh, you know, theNational Organization for Rare
Disease for NBDF, you've spokenfor HFA, you've spoken for HFN,
you've spoken for all thesedifferent places all over the
place.
You have the most uh you knowrigorous speaking schedule, and
(46:04):
and uh and so it is reallybeautiful to see you out there
and and advocating for ourcommunity.
When you look at people andespecially women with bleeding
disorders, who are still notbeing, you said it earlier, 16
years on average across allbleeding disorders.
16 years, and and I believe, ifI'm not mistaken, that statistic
(46:26):
is from the CDC that shows thatit's actually from the first
evidence of a bleed.
So, so there's a there it's it'san activity of bleeding that
occurs and it still takes 16years longer than it should.
Um, I believe the average age isstill around 35 or 32 years old,
somewhere in there for women aswell, right?
SPEAKER_04 (46:46):
And for every dollar spent on a male with a bleeding
disorder, only 25 cents goes tofemales.
SPEAKER_02 (46:57):
And women's health in general is this way too.
I mean, I think it's interestingto note that women's health in
general is it it is already, mendo get more timely responses.
And it's really unfortunate.
And at the same time, what canwe do as a community to share
(47:17):
our story, to share ourexperiences, to share our
journey?
What can we do as a populationof people living with rare
diseases do to try to createchange in that way?
SPEAKER_04 (47:30):
We're gonna have to be on the front lines.
Our stories are no longer ours.
They have to be told.
We have to walk the halls ofCongress.
We have to share our stories, wehave to knock on doors at the
state level, at the federallevel, and if you're placed in
trajectory like myself globally,you have to let people know
(47:53):
there are real people behindthese evidence-based data and
numbers.
SPEAKER_02 (47:59):
It's not just a data point, it's a person.
SPEAKER_04 (48:01):
It's a person.
It's a person.
And you know, I matter, youmatter, we matter.
We have loved ones.
SPEAKER_00 (48:07):
They're counting on us.
SPEAKER_04 (48:09):
So we have to go forth and do that.
That's one of the things we haveto do.
Another one of the things wehave to do, like I said, is we
have to get into these academicsettings and these medical
schools, and we have to shareour stories there too.
Before these practitioners andthese clinicians get out into
practice, we have to talk withthem, share with them, let them
(48:30):
know that besides what they'velearned in the book, this is
also happening to individuals.
This is happening, and it may bedifferent for John and Susie.
We have to be in person, peoplefacing, sharing our stories.
Um, and I would think the nextthing we have to do is the third
(48:51):
thing, we have to actuallyeducate and encourage and uplift
one another to keep going, youknow, to keep going, to keep
telling your story, to keepbeing an advocate for yourself
and your family members, and touh never give up.
SPEAKER_02 (49:11):
I always say that there's uh three people at the
seat of a decision of getting amedication or getting a
treatment right.
There is the physician who hasto write the script, that kind
of is a big, big role,obviously.
Um there is the organizationthat's gonna pay for it, which
is the insurance company, that'san important person at the seat
(49:34):
of the table.
But a third of the equation, athird of the voices, if you
will, at the point of decisionof getting treatment is the
person living with the disorder.
And I think so often we think ofourselves as the leftovers, we
(49:55):
think of ourselves as the thelowest priority.
In essence, neither one of thoseother parties, independent of
themselves, can have anytransaction going on.
There is no medication, there isno, there is there is nothing
happening, but it's the patientthat's at really at the center
of the equation.
(50:16):
And I think I've said for a longtime, I really believe if
patients really understood thepower that we have to be able to
speak up for ourselves, but alsocollectively as a community to
come together to really voicewhat our needs are and and
really assert our influence, ifyou will, into the conversation.
(50:36):
Because at the end of the day, adoctor can make a
recommendation, but he's justpracticing.
He or her is just practicing.
They're making a recommendation.
That's what she's that he or sheis doing.
Exactly.
And they're also really at themercy of making certain that
somebody pays for that abilityto happen, which is the
insurance company, that'simportant.
Um, unfortunately, I thinkinsurance companies have too
(50:59):
much to say these days.
They're influencing limitedformularies with only a few
drugs, they're in influencingwhich doctors to see nowadays.
And don't get me started onPBMs, because we go there all
day long too.
But I think at the end of theday, if we understood our voice
and how much influence that wecould have if we really got
(51:20):
organized.
And the the truth is, is that Ithink as a as a as a patient
population, just in general, andagain, I'm speaking in very
generic terms cross-rarediseases as a whole, or any
chronic illness for that matter,it doesn't even have to be rare.
But we're disorganized and wedon't have nearly the financial
backing.
Most of us are not going to haveanywhere near the money that an
(51:43):
insurance company has, or someother company has to lobby
against this.
So the progress is reallyincumbent upon our passion and
our directive.
And it starts with winning thelittle battles along the way for
yourself and your family.
But I think the next phase isthat once you start to win some
of those battles and youcollectively get together and
you share experiences with oneanother and you realize it in a
sense of community, then we havea collective voice that has the
(52:07):
opportunity to create realchange.
But it takes us gettingorganized, focused, and
determined.
And without that, I don't thinkprogress will ever happen.
SPEAKER_04 (52:17):
But we have to harness the power of our voices
and our experiences.
And we have to, we have to goforward and tell our stories.
And we have to say, listen,Company A, I use your products.
Several of us, especially wewomen and girls in this
community, we use so much ofyour products.
(52:39):
Why are you not supporting ourprogramming?
We have to use the power thatyou were just speaking of, of
our with our voices, andcollectively come together and
say, if we're using product Afrom Company A, then we need
your support with our programsthat help us not just survive,
(53:02):
but thrive.
SPEAKER_02 (53:03):
Yes.
Yes.
Yes.
It's so frustrating thattechnology exists to solve these
problems.
And so often so many peoplesuffer silently because they
can't even get to the solutionsthat already exist.
I think that it is the fact thatwe raise our voices and share
our stories togethercollectively that actually helps
(53:24):
to move that into a place ofprogress instead of stagnation.
And I and I I personally am soinspired by your story and the
work that you're doing tocontinue to be brave and and the
courage that it takes for you tocontinue to stand on the stages
that you stand on to speak upfor women and leveraging your
(53:46):
story to do that.
I mean, you're using resourcesthat that were tragedy after
tragedy after circumstances thatshould never have taken place,
and you're turning it intosomething that's really
beautiful.
It's truly a story from beauty,from from ashes to beauty.
And I really am so thankful toknow you.
(54:06):
I'm so thankful to watch you.
I I am inspired by your journey.
And um, I really believe in inso many regards, it's it's your
story and your journey that isis really providing hope for a
whole community of women andgirls out there that just that
you have overcome some bigbattles that some women will
(54:29):
never have to overcome.
There's so much further to goand so much progress that needs
to be made.
And I know I'm committed tothat, you're committed to that.
I know hope as an organizationis committed to that.
I know as a community we'recommitted to that.
And I don't think that I thinkit's gonna, you know, take some
time and determination andresilience and all of the things
that you embody.
(54:50):
But together, as we link arms,just like we have in this
conversation, I think our futureis brighter tomorrow than it was
yesterday.
And I think we have the abilityto be able to do great things
for each other and for ourselvesas we continue to move forward.
SPEAKER_04 (55:05):
Thank you so much for saying that.
Thank you so much.
That means that means a wholelot to me.
You know, I'll know Jonathanthat I've done okay in this
world.
When I can look at it and yourdaughter, and their daughter,
and their daughter.
(55:32):
I don't know that I've done allright in this world.
When the little girl looks inthe mirror and feel the way that
I felt scared, anxious, we'reall human beings.
(55:59):
We can be kind, we can listen toeach other, and we can take
stock in what is shared.
And then we can becompassionate, not just
empathetic, but compassionate.
The difference in empathy andcompassion is compassion wants
to alleviate the suffering, soit acts.
(56:20):
Empathy says, I hear you.
Okay, I feel you.
I know what it is to walk a milein your shoes, but compassion
says, let me give you a smile, apat on the shoulder to see what
I can do to help you.
So beautiful.
That's what I want.
SPEAKER_02 (56:39):
We are doing it, and um I'm happy to be uh part of
your fan club, and I lookforward to seeing so much more
happen, and uh I certainly forlook forward to being able to
link arms and help even morepeople that hopefully you're
watching this story today andgetting inspired already, like I
have been, but also, like yousaid, laying the groundwork for
(57:02):
generations to come so thatothers won't have to fight the
same battles that you fought.
The ground that you have hadvictory over in your journey and
in your life, I believe, haslaid the foundation for the next
generation to stand upon.
And for that, I'm supergrateful.
Thank you so much, Connie.
SPEAKER_04 (57:20):
Thank you.
And hopefully, ladies and teens,we'll see you out there at the
Hulk conference in November.
Hopefully, I'll be there.
SPEAKER_02 (57:28):
Yes.
Yes.
Awesome.
Thank you so much for joining mefor this conversation today.
Please, please, please continueto share this episode with your
friends and family so that noone feels alone.
Thank you so much for listeningto this conversation today.
I hope it inspired you and Ihope that you have a chance to
(57:49):
be able to share this episodewith your friends and family.
If you haven't already, pleasemake sure that you like and
subscribe.
It really helps the algorithmout to help us be able to get
this information in front ofmore people.
And also, I want to say aspecial thank you to our episode
sponsor, Janentec, forsponsoring this content and more
like it.
I certainly hope that thisepisode helps you and your
(58:09):
family in your journey as youuncover the challenges and find
solutions for sticking togetherand advocating together.
I hope to see you in the nextone.
Take care.
Welcome to the Hope Podcast.
My name is Jonathan James, andI'll be your host today to talk
more about women with bleedingdisorders.
In this episode, I have a dearfriend who's joining me today to
talk more about her experienceas a woman living with a
bleeding disorder, ConnieMontgomery, Factor VII
deficiency with so manychallenges throughout her
lifetime, and excited to unpackthis conversation with you
(00:21):
today.
I want to say a special thankyou to our episode sponsor,
Janintec, for sponsoring thisepisode.
Welcome to the Hope Podcast.
My name is Jonathan James, andI'm excited to have a special
interview with a special guest,Connie Montgomery.
It is so great to see you today.
(00:42):
Thank you so much for joining mefor the Hope Podcast.
SPEAKER_04 (00:45):
Thank you so much, Jonathan, for having me here
today.
I'm very excited about this timeand us having a chance to talk a
little bit about my journey inbleeding disorders.
SPEAKER_02 (00:54):
Yeah.
You know, I've been lookingforward to this conversation for
a long time.
We have a very close mutualfriend, Debbie De La Riva, who
has introduced us.
And I'm just so thrilled just tounderstand more of your
background and your story.
And I've been looking forward tothis conversation for a long
time.
And so uh you have so manyunique twists and turns in your
story and so many things thatyou've overcome, and so much
(01:15):
depth to what you've learned andhow you've been equipped and
really just the warrior that youare for yourself, but also
championing for others becauseyou've empowered so many people.
And so just for people who arelistening that may not know you
like I do, or maybe nearly aswell as Debbie does, I'd love to
know a little bit more aboutwhere you're from and how you're
(01:36):
affected by bleeding disorder,and then we'll just kind of dive
into your story from there.
So why don't you tell us whereyou're from and how you're
affected by bleeding disorder?
SPEAKER_04 (01:44):
Absolutely, Jonathan.
I'd like to share with you I amfrom a small town called Pauli's
Island, South Carolina.
It's the southeastern part ofthe United States.
Um, absolutely love being aSouth Carolina young lady.
And um I'm married and I havetwo adult children, and I am in
the bleeding disorderscommunity, and I have factor
(02:05):
seven deficiency.
And um, I was diagnosed withfactor seven deficiency much
later in life, like many women.
I was in my mid-30s when I gotdiagnosed.
SPEAKER_02 (02:17):
Wow.
Wow, I there's so much to unpackin this world.
It's so you are a rare jewel inmany, many ways.
We just recently had an articlethat we published about your
story in the Hope Factormagazine.
So I know a lot of people arereading that and getting really
to know your journey a littlebit more.
But this conversation really isexciting because we can dive
deeper into some of yourbackground and some of the some
(02:40):
of the challenges that you face.
But I, you know, starting outjust kind of at the beginning,
you know, when when as a littlegirl on your journey, did you
have any suspicions that you hada bleeding disorder early on?
And and what was it like growingup?
SPEAKER_04 (02:57):
Well, growing up in rural South Carolina was really
different for me, and it wasinteresting because we were very
active people.
We did a lot of outsideactivities.
Um, there was, of course,gardening and that type thing,
um, and running around playingand having hopscotch and playing
jack stones and pickup sticksand all those type things that
little girls did back then.
(03:19):
Uh, a lot of the activity wasoutside.
It was engaging with just whatwas around you and playing with
cousins and this type thing.
Um, but I knew something was alittle different about me
because of the bruising, thespontaneous bruising.
Um, I'm a brown person, a blackindividual, identify with a
black diaspora, AfricanAmerican.
(03:39):
However, I would always havethese black and blue spots on me
that were purple like that wouldjust pop up spontaneous, seemed
like to me, um, in variousplaces on my body.
And I'd wake up that way.
And then sometimes I'd wake upand there would be uh blood on
my pillow, and I couldn't quite,I didn't quite understand that.
(04:00):
But it wasn't until my pubescentand preteen years that um things
started to uh just spiral and godownhill faster.
And so having a conversationwith my mother, she and I,
though mother was gulagy, and inthe gulla geechee, uh geezy
culture, we don't believe insharing family business out into
(04:21):
the world.
But we knew that we had to getsome help from myself.
So mom and I um made doctor'sappointment, went to the doctor,
shared what was happening withme, the bleeding spots on my
pillows, the long nosebleedsthat lasted for 10 to 15
minutes, the spontaneousbruising, all of that we shared,
um the swollen joints, the soreand painful joints, we shared
(04:44):
all that information and weretold that, you know, they
thought we were exaggeratingabout the condition.
It couldn't possibly be thatbad.
I was making up those symptoms.
They didn't believe us,dismissed us, and uh that just
left a very bad taste in mymouth for healthcare and
healthcare practitioners.
So for quite some time,Jonathan, I put on the back
(05:05):
burner my health and uh myhealth journey, and I just coped
and dealt with it as did mymother, the best that we could
by taking care of myself andourselves in the home.
And um that's what we did.
I packed the extra clothing thatyou pack when going to school.
I didn't get to participate in alot of the outside activities
(05:28):
like a lot of my preteens andteenage friends did, and
absolutely no sleepovers um thatI have with my girlfriends, like
the slumber sleepovers thatgirls had a lot back then.
Didn't have any opportunity forthat type thing because I would
bleed through my clothing and uhhave to change clothing and
garments frequently.
So went through a lot of that,and that made my teen years a
(05:51):
bit difficult uh to navigate,but I was always prepared,
always cared a satchel withextra clothing.
SPEAKER_02 (05:58):
Wow.
You had to be because you justknew that there was a
possibility that could happen atany time.
Tell me about your familydynamics.
You have siblings?
SPEAKER_04 (06:07):
Yes, I do.
Um, I was number three of thefour girls um before my mother
adopted my youngest brother inher later stages of life.
Um, and with three girls, um,Brenda being the youngest, four
total, um, that was kind of hardon mother because she was
married for 14 years.
(06:28):
And after uh mother got adivorce um from dad, with him
taking a job due to his um loweducational level, he worked on
the road quite a bit.
And so um their marriagesuffered at the cost of this.
And so after 14 years ofmarriage, they got a divorce,
and mother was left to raise herfour girls.
And I did not want to add orcontribute to the stresses.
(06:51):
I was smart enough to know that,even young, uh, that my mother
had by always complaining withmy health issues.
So that's another reason, too.
I put some of the health uh uhissues that I was struggling
with with the bleeding disorderon the back burner with the
noseblees.
I just tried to deal with it.
I'd go to school sometimes,Jonathan, and my nose would just
pour, poor, poor blood.
(07:12):
And I would use all the tissue,the paper towel, everything that
was in the bathroom to try tomanage it to the point where um
I'd be missing a good bit of theinstructional time in class.
And I just try to clean upeverything in the bathroom and
just return to class like, youknow, there was no problem.
And I always had the extrachange of clothes in my satchel
so I could change um and put ona different top if I needed to.
(07:34):
But it made things kind oftough.
But I felt like mother hadenough she was dealing with,
trying to raise four girls onher own, even with her limited
educational level.
So I didn't add any additionalstress to mother.
She was keeping uh care of ourhousehold, she was taking care
of me and my sisters, and shewas working two to three jobs
always.
So that was enough for oneperson to deal with, I felt.
SPEAKER_02 (07:59):
Did the did your other siblings have any symptoms
that they displayed or any otherfamily members beyond even just
your immediate family that haveany symptoms?
SPEAKER_04 (08:08):
Well, like I said, my mother's Gulagie, and a lot
of times in the Gulagsi culture,we don't always talk about,
right?
Um, what's going on with youmedically?
We are resilient, a proudpeople.
So we just cope and we deal andwe handle the best we can
whatever situation we findourselves in.
(08:31):
Even amongst ourselves, uh,there wasn't a whole lot of
conversation about it.
But I do remember hearing uhsome of the great aunts talking
about free bleeder syndrome.
Free bleeder syndrome.
Later in life, I learned thatthat free bleeder syndrome was a
part of this bleeding disordersituation that I ended up with.
(08:54):
And I have a younger siblingwhose child was born.
Um, and he, her son, presentedwith a bleeding disorder.
And that started to open up thedoors, yet we still didn't talk
much about it amongst ourselves.
SPEAKER_01 (09:11):
Yeah.
SPEAKER_04 (09:11):
And definitely not to others until we were
desperate and needed the help.
And then we were dismissed byhealthcare professionals and
clinicians.
And that just set up a level ofum feelings for myself that uh I
wanted healthcare to lookdifferently for other people.
And so later in life, I decidedto become a healthcare
(09:33):
practitioner, an occupationaltherapist to be exact, so that
no one else I thought that uh Iwould have the opportunity to
work with would feel the waythat I felt, which was
dismissed, unheard, and unseen.
SPEAKER_02 (09:47):
There's so much to unpack with that because I feel
like that it there's you had itwas the perfect storm in so many
ways, right?
You had a lot of dynamics goingon there that was suppressing um
your ability to ask questions toprofessionals, to be able to
seek for a fair response fromprofessionals.
(10:10):
Um being in the deep south, Ican't help but think that you
had some discrimination issuesduring the timeline that you
were growing up as well.
Like, how did that impact yourability to to communicate and
even expect in interaction?
I mean, your family dynamicalone is like we don't talk
about this.
I mean, who who are you supposedto turn to?
How how do you even cross thatbridge?
SPEAKER_04 (10:32):
Well, for me, um, my faith played a huge part in how
I was able to navigate and moveforward, even as a teen, you
know.
Um, I spent time um talking tothe Lord, praying and reading my
Bible, and that helped menavigate and get through some of
it.
But to tell you the truth, Iwish at that time there were um
(10:56):
another outlet for me.
And I really do wish thathealthcare practitioners and
clinicians at that time listenedto what my mother was saying and
listened to what I was saying.
Because within myself, that setup a feeling of uncertainty that
though these people are supposedto be professionals, you're not
(11:20):
even listening to what I'msharing with you, and I'm
directly in front of you sayingwhat's going on.
My mother's saying what's goingon, and you're not hearing me.
So that right there made mequestion their ability, even
later in life, to be the type ofprofessionals in healthcare.
In healthcare, you're supposedto care.
(11:41):
And I wasn't experiencing thator seeing that, nor did my
mother.
So I thought, yeah, healthcareis where I want to go.
That's the type of work I wantto do.
And I don't want anybody elsewho would need my services as
occupational therapist to everfeel that way.
Um, but more importantly, Ithink for me, what it did was it
gave me an open window, firstjust first rate view of health
(12:09):
and health disparities in thiscountry.
Because I have to be honest,being a black woman in the
South, not feeling seen orheard, also being someone from
the Gulagie culture, knowing,knowing the atrocities of the
(12:31):
enslaved, because I'm GullaGeechee.
My family came forcibly to theUnited States.
Um, we knew that prejudice andbias was there and is here
still, but to experience it inthat way in the healthcare
setting was not a goodexperience.
Because, you know, we heard thestories.
(12:52):
I heard the stories as a childgrowing up, you know, about, you
know, our first medicalexperiences being on the slavery
auction block in Charleston,which happens to be about 72
miles from where I currentlylive.
But it's one thing to hear aboutit being experienced from your
ancestors and those older thanyou, and then experiencing it in
(13:13):
modern day time yourself, goingto the doctor, knowing
something's wrong with you,bleeding for 10 to 12 days with
your menstrual cycle, havingextreme menoragia, passing huge
clots and telling this tosomebody, being vulnerable
enough to open up and share thiswith somebody, and then being
totally dismissed and saying,no, no, that's that's that's not
(13:34):
what you're experiencing.
You're exaggerating about that.
That's not happening to you.
And no father, no father workupassessment evaluation being
done.
Uh it just felt inhumane.
SPEAKER_02 (13:50):
I can't even imagine.
I'm so sorry.
Thank you, Jonathan.
I know that that's part of whatfuels so much of your passion is
not wanting others to experiencewhat you went through.
And it's it's one of the thingsthat I think that you know is
hard for people to understandthat haven't gone through that.
(14:11):
I mean, I you know, I think Ithink that there's there's a
certain measure of dismissalthat anybody with a rare disease
or or or even an invisibledisease understands.
But the compounding, I can'tthink of I I just it just seems
so overwhelming to me to thinkabout just in every sense of uh
(14:34):
and everywhere you turn thatpeople are just completely
dismissing what you've beenthrough.
We know that women with bleedingdisorders in general, the I used
to say the science hasn't caughtup, but that's actually not
true.
The science has been there for along time.
And um, but I think about thatin the context of what you
shared about discrimination,even in this country.
It was a hundred years plus,maybe two hundred years before
(14:56):
we started to really get to apoint where there's some sense
of like, okay, why are we stillhaving like why are we still
treating people inhumane?
You know, there's a sense ofequality that is we should see
each other as human.
We should see each other as asas the same.
And I don't understand, youknow, uh, I don't understand
what that's like.
I I it's it's remiss if I don'tsay, I mean, I'm a middle-aged
(15:20):
white guy, right?
I can't get around that, youknow.
And so, and and and so all I cando is try to is try to imagine
what that was like.
And and with the few things thatI've experienced in my life,
it's been a small, tinyfraction.
And so the fact that that you'vebeen able to push through and
overcome over and over and overand over again in all of these
(15:44):
hurdles, you have had everythingagainst you.
I I can only imagine, you saidit at the beginning, your faith
is what helps you to pushthrough that.
I I I it but it's also yourinternal fortitude, your your
endurance, your your passion forothers, um, all of those things.
It it just it it you know it'sgotta be the compounding nature
(16:07):
of all of your resilience toothat has helped you to continue
to push through all of thosethings.
And I see that in in not justyour life story, but I can
imagine you were you were thatway even as a teenage girl
pushing through because youweren't gonna take no for an
answer no matter what.
You were just gonna live throughit.
SPEAKER_04 (16:26):
Thank you so much for saying that.
Um I think when life people thathave challenges and adversities,
we have to validate theuncomfortable feelings that
those challenges and adversitygive us.
But Jonathan, I don't think wecan lay there.
We can't stay there.
(16:46):
We must we must give peoplegrace express what it is we feel
the best we can, right?
And then find solution andstrategy, hopefully, to make
things better.
Which is exactly what I feellike we are doing here, even
(17:07):
with this podcast.
Yes, opening up and beingvulnerable like this for me is
not easy.
First of all, based on myupbringing and the way I was
reared, but it is necessarybecause I want no other little
girl in this country or woman orteen or person to feel the way
(17:31):
that I was made to feel.
I I I don't want that for anyoneelse, you know?
And so if hopefully my story isout here and I get an
opportunity to share it far andwide, people will think deeply
and think long about the personsitting in front of them and
(17:54):
treat them with compassion.
SPEAKER_02 (17:56):
It's so good.
It's so good.
It's the only way that weprogress in humanity, right?
Is that it starts withlistening.
And um that's why I love yourstory.
There's so many parts of yourstory I want to get into.
But let's we kind of left atteenager years, right?
(18:16):
And so it was another quite awhile.
I mean, 35 is when you werediagnosed officially.
So let's talk about goingthrough the end of high school,
getting into college.
What was that like?
I mean, you're still dealingwith all these symptoms.
Are you still asking the doctorsthe question, or have you given
(18:38):
up on professionals being ableto help you at any capacity at
this point?
SPEAKER_04 (18:43):
Because I decided to go to a local college after high
school, I went to Francis MarionCollege, now Francis Marion
University, and I studied thereto get all my prerequisites to
be accepted into the MedicalUniversity of South Carolina so
that I could become anoccupational therapist.
I knew, because my mom was asingle parent, I had many
(19:06):
factors or competing interestsat the time.
I knew I was going to have tobalance whatever was going on
with me because I still didn'thave a diagnosis, whatever was
going on with my health and thebleeding issues, work and go to
college.
So what I did was in the oneplace I did not want to go, I
(19:26):
went there to be a helper.
I worked at a local hospital.
I worked at McLeod Hospital inFlorence, South Carolina, in the
SICU as a ward clerk while, andat Sears part-time on the
weekend, while going to collegeat Francis Marion and trying to
manage my bleeding disorder.
So with having the jobs, thebleeding issue, and going to
(19:51):
college, four-year college toget my prereqs so I could get
into Medical University of SouthCarolina to get in the
occupational therapy schoolprogram, it was a true balance.
And making certain that I didn'tmiss too many days out of
college and class work so that Icould keep up and stay on top of
my studies so that I wouldgraduate on time, that was a
(20:14):
balancing act.
I bet.
That was a balancing act.
But I knew after doing it that Icould do it if I push forward
and have the support system ofat that time my sweetheart, who
became my husband my sophomoreyear in college.
I got married a sophomore yearin college, and he supported and
(20:38):
helped me greatly so that Icould finish college and manage
having a bleeding disorder, eventhough it was undiagnosed at the
time, by going to doctors'visits and talking to them and
telling them, okay, I think Ineed help here.
I think it was my sophomore yearin Beaufort, South Carolina,
(21:01):
when I went down to visit him.
And I went for just a regular, aroutine check of uh OBGYN visit.
And the doctor just said to mehere again, I think you're lying
about all of this straight to myface.
I don't believe this ishappening to you.
And I did not go back to anotherphysician for the next, I think,
(21:23):
three years after that.
I just coped the best that Icould until I finally graduated
in 1993 from the MedicalUniversity of South Carolina.
SPEAKER_02 (21:33):
Oh my God.
SPEAKER_04 (21:34):
Um wow.
But I was newly married, I'llnever forget it.
It was 1990.
I was newly married when I wentto see him.
And I just wanted to makecertain everything was in order
and things were okay and that uhhe would consider hearing my
symptoms and possibly do anassessment and evaluation and
look farther into what washappening to me.
(21:56):
But uh that wasn't the case.
But after that doctor turned medown, my husband was stationed
at the Marine Corps Air Stationin Beauford, and so that's why I
went to the OBGYN down there.
I didn't go back for threeyears.
But I say that to say all ofthis.
You know, one interaction youhave with a person, you don't
know how long and how far thatinteraction could go.
(22:18):
Um so for three years afterthat, just for a random teeth
cleaning, I did not go.
Um I it I just shun healthcareprofessionals from that point
on, even though I was in collegetrying to become a healthcare
professional.
I put my own health on the backburner or not even on the stove.
(22:38):
Um and I don't recommend that.
I do not recommend that.
Um I hope that someone in thesame position would go and try
and get care, get a secondopinion, a third, a fourth.
That's why I so stronglyadvocate now for women and for
uh girls with health careissues, be it a bleeding
(23:00):
disorder or a chronic healthissue.
Go to someone else.
Go and speak your truth untilyou are heard.
Share your symptomology,regardless of what the other
clinician or the person on theother side of the table tells
you.
SPEAKER_02 (23:16):
Yes, that's so good.
So good.
There, I I again just, you know,I I'm even thinking about three
years.
I don't even know how you goback, even after three years.
I mean, that just shows againyour your you know, fortitude to
say, you know what, at somepoint I'm gonna, I'm gonna get,
(23:36):
I'm gonna step back into thering.
And of course, at this time,there's no Google, there's no
like WebMD to like searcharound, or it's really probably
pretty frail at this point, evento be able to do your own
research, right?
SPEAKER_04 (23:48):
Right.
But the beginnings of that wasstarting, but even with that,
um, it gets worse because theonly reason I returned to the
doctor is because I'm bleedingand I'm bleeding a lot, and I
don't know what's going on.
And this bleeding has taken upfrom the 10 to 12 days of a
menses to at least half a monthnow, and I something's not
(24:10):
right.
So when I go back, I go back tosee an OBGY-in in Florence,
South Carolina, and I learnedthat I'm expecting a little one.
Um, but this is shocking to mebecause how can I be expecting a
baby and I'm continuouslybleeding?
Um, but certainly it ishappening.
And um, when I went back waswhen I had to go back because
(24:35):
the pain was so bad and thebleeding had uptake.
Wow.
But even worse atrocity happenedto me because I learned that I
was expecting that little one,and he was born January of 1994.
But during the entiregestational period, during my
(24:56):
entire pregnancy, I bled everymonth, and uh it was extremely
hard.
It was just a nightmare of apregnancy.
I was always anemic, I wasalways tired, and uh still no
further tests or anything wereran or done.
And uh even when I changed OBGYNdoctors three and a half years
(25:16):
later, when I got pregnant withmy second child, which was 97,
very similar occurrence, and Iwent from a male doctor the
first time I had my first babyin 94 to a female doctor when I
had my baby in 97.
And it was just blatantdisregard for the things I was
sharing, and by that time I'dbecome a healthcare professional
(25:38):
myself, and I knew, I knew I hadto do something different.
SPEAKER_02 (25:43):
Oh my gosh.
So, so walk me through how is itthat you eventually find out
that you're diagnosed?
I mean, how do you how do youget to a diagnosis?
SPEAKER_04 (25:55):
A car accident en route to Charleston, South
Carolina leaves me in a canalditch with the front of the car,
neck and neck, with a hugeconcrete um boulder that was in
that ditch.
But the blessing of that caraccident opened the door and the
(26:18):
windows to what was going onwith me all of my life.
It was a knowledgeable ERdoctor, Dr.
Richmond.
I'll never forget him, you'llforget him.
He graduated from Richmond.
Richmond, the Medical College ofVirginia in Richmond.
(26:39):
That man was a blessingunbelievable.
After looking at my labs in theER and seeing that the bleeding
wouldn't stop, he made aconsultative call to a
hematologist.
And between the two of them andweeks in the hospital, them
going back and forth looking atthe test, they were like, this
is congenital factor 7deficiency.
SPEAKER_03 (27:01):
Wow.
SPEAKER_04 (27:02):
She was born with factor 7.
In the emergency room.
I learned that being in thehospital because once I was in
that emergency room, he placedme in the hospital until all
those tests, until all thoseconsultations were done with
that hematologist.
Wow.
So Dr.
Richman and that hematologistreally blessed me because they
(27:25):
gave me answers that I had beenlooking for for years.
SPEAKER_02 (27:29):
And what really should have been a tragedy that
many people most likely wouldhave died from even in the car
accident, here it becomesliterally a turning point for
your the window to your futureand solutions, right?
SPEAKER_04 (27:42):
Well, the thing is, I almost died having the two
children, so I had emergencyC-sections.
My children didn't come hereeasily.
My story is hard.
Um I almost died having both ofthem.
But they made it and I made it.
Never had a blood transfusioneither.
Just went home sick, and whenyou see a black person turn
(28:03):
gray, they're about at thegrave.
And um that's about what I looklike.
Pretty gone.
But I made it through thoseyears and I made it through that
time.
But I think I've made it throughall of that for this very moment
and the moments that I'm livingnow, where I get to tell and
share my story.
Hopefully, hopefully, thiscountry and so many others that
(28:27):
struggle with health disparitiesand gaps will hear my story.
And healthcare practitioners andclinicians and even family
members will hear, listen, andhear people's stories and hear
their symptoms and do somethingabout it.
SPEAKER_02 (28:44):
Yes.
You go from from this caraccident, getting diagnosed,
getting solutions.
Does that lead to treatmentright away?
SPEAKER_04 (28:56):
No, that does not lead to treatment right away.
Because I go and see a malehematologist, and this male
hematologist, at therecommendations from the
hematologist that consulted withDr.
Richmond, the ER doctor, tellsyou you might want to do some
further testing, look closely,and see if this individual would
(29:19):
qualify for prophylactictreatment.
Well, the first hematologist didnot believe that uh that was
necessary and that I needed thatbased on my lab work only,
wasn't listening to what I wassaying.
And see, a lot of times withyour factor 7 patients, the
(29:40):
levels may look different fromthe symptomology, which is what
the patient or the person isexperiencing.
Right.
I think sometimes our cliniciansand our healthcare
practitioners, even myself beinga healthcare practitioner, uh,
we don't really dial in and tuneinto what the patient or what
the person right there in frontof us is saying.
(30:01):
But if we do more of that, thatwould help with better patient
outcomes and better overalloutcomes for caring for people.
SPEAKER_02 (30:14):
One of the things that I think is interesting is
that you're hearing more talkthese days about phenotyping.
Obviously, genotyping is soimportant with genetic
mutations, but phenotypingessentially is just how it
impacts you, right?
It's your story.
And and I encourage womenoftentimes, like, man, utilize
you gotta speak in a languagethat even the healthcare
(30:36):
provider can understandsometimes.
You know, you're I had a friendof mine who's a physician that
says, she always says, you know,that at the core and the heart
of every physician is ascientist who's living inside.
And sometimes you gotta kind ofintrigue the scientist inside of
them to make them start thinkingand and and trying to
investigate, right?
Yeah.
(30:56):
Um, I I heard a an old doctorwho who is about 85 years old.
His son was going throughmedical school and he gave his
son this advice.
He said, he said, diagnosis intoday's medical practice is a
lost art.
And he said, if you will justutilize your, he's you're gonna
have to self-educate becausethey won't teach you in this in
school.
He said, but he said, heencouraged his son.
(31:19):
He says, you need to learn theart of diagnosis.
And it starts with listening.
And I think that that, you know,uh sometimes using that kind of
framework to be able to say,hey, I'm having these symptoms,
but my phenotype is, and thenyou start to express what your
experiences can be quitecomplex.
(31:41):
And I understand in in factorseven deficiency, especially,
you mentioned it kind ofbriefly, but there is a real it
is a there's a lack of educationfor many hematologists, even not
I'm not specifically speaking toHTC specialists, but hematology
oncology as a broader specialty,if you will.
There's a huge misunderstandingabout women with bleeding
(32:03):
disorders in general, but factorseven is extra complicated in
the sense that, like you said,the factor, the actual protein
levels themselves don't reallytell much to the story.
It it could, but it might not.
It really has a lot to do withthat that lived experience,
right?
SPEAKER_04 (32:18):
And you need to really listen and dial into what
that piece of the puzzle is inthe clinic.
You need to hear out what thatpatient is saying to you because
as you hear it, then you canstart to put the pieces of the
puzzle together.
But you cannot omit any part ofwhat is being spoken to you.
Just looking at the labs or justremembering what you read in a
(32:40):
book.
You need so much more than that.
Um, but I'd also like to say, Ithink um in this country.
Now I'm talking a little bit tomy clinician, professionals, and
others that like myself, alsowho've gone to medical school.
I think we need to have a lotmore narrative education.
(33:04):
And some of our classes in theseuniversities and college and
collegiate settings, we need tohave patients with various
conditions come in and educateus about what their conditions
look like, as opposed to justwhat we've read in a book.
Because when we do more of that,then we get to a fuller picture
(33:28):
of what these various diagnosestruly look like.
SPEAKER_02 (33:33):
It even applies to treatment, right?
Because even once you start atreatment path, just because it
says it on the label doesn'tmean that that's what you're
gonna actually see occur inevery single instance of every
single person.
Every person's gonna interpretthat treatment even a little bit
differently, right?
Because we're all differentpeople.
SPEAKER_04 (33:51):
Yes.
We're different.
We're a diverse population.
And so based on certain people'scultures, lifestyle, and let's
even go there, their healthliteracy, what they're able to
understand, all of that is goingto affect whatever treatment
they get.
The only way you know that ishaving a conversation with that
(34:13):
individual, spending time withthem, getting to learn and know
about them and their habits andhow it impacts the medical
intervention that you'rerecommending.
SPEAKER_02 (34:21):
So good.
I just while we're talking toclinicians, this is I I had a
nurse care coordinator at atreatment center one time tell
me this story, and I thought itwas so wild, I did not even
think or consider that thiscould happen.
But again, to speak to healthliteracy, um, there was this
patient that they were giving,and he was treating
prophylactically on a regimen,and he was having bleeds just
(34:43):
all the time, and and theycouldn't figure out what was
going on.
He was like, Man, you're takingyour medicine, right?
Yeah, here's my my logs, here'swhat I'm doing, all this stuff.
Come to find out, they werelike, okay, she eventually
intuitively this goes on foryears, and intuitively she says,
Look, can you just come into theclinic and I want to watch you
infuse?
This is just visual observation.
(35:03):
Now, this kid's gone to camp andhe's a young adult now, he's
doing all this stuff on his own.
He comes in from clinic, intoclinic, he gets ready, mixes up
his medication, he goes toinfuse.
He wasn't getting it in a vein.
Now, you tell me who would havethought, number one, to ask that
(35:26):
person if he was even getting avein.
I don't think he even knew thatwhat he was doing with the
administration of it the thepoint is is that sometimes the
the to exactly what you said, itis a combination of observation,
asking more questions, listeningmore, but also sometimes it's
just are they interpreting whatyou're trying to educate them
(35:49):
with?
You don't even know that untilyou actually have that level of
observation, right?
SPEAKER_04 (35:56):
And to have that level of observation and even
that level of communication,there has to be some type of
trust built between the two ofyou.
It has to be more than just atransactional connection, it has
to be a relationship thathappens between the
conversations that you all havewhere that person feels like I
(36:18):
can open up and give you theinsights.
SPEAKER_02 (36:20):
Creating a safe space.
SPEAKER_04 (36:21):
All right.
Right?
SPEAKER_02 (36:22):
You've got it.
That's that's the thing, is thatI think so often one of the
things that we do once once youdo find treatment and you find a
trusted care team, I think evenas a person who has felt like,
and I and I look, I recognizethat in my experience it's a
tiny minute fraction of whatyou've experienced in terms of
(36:44):
not feeling heard.
But even in the little bit thatI've experienced in that,
there's a tendency for me towithhold information.
I just want to get through andgo through the motions and do my
deed and just get in and out ofmy annual visit and be done with
it.
But I've learned actually, Ihave four kids and two of my
kids are girls, and they bothhave they've been uh, you know,
(37:06):
we're we're we moved away fromthis obligate carrier language,
and now we're talking about,okay, they are affected and they
need treatment.
And so in the process oflearning, even for me to help
them through this journey, oneof the things that I've learned
is that I've got to, I have aresponsibility also to be
vulnerable, to be transparent,and to come prepared to this
(37:29):
appointment, to actually behonest and say what's really
going on.
Because, you know, so much we wehave this, I think as patients
too, like we expect thephysician to come to our side of
the table, but sometimes thepatient can only help make
recommendations or evaluationsbased upon what the patient
gives them to work with.
(37:49):
And so we can get in our own waysometimes, too, can't we?
SPEAKER_04 (37:54):
So we have to open up.
We have to completely open up,like you said, and be
transparent, be honest, andshare those tough things to
share.
We have to just say it.
I think that's so important withgoing forward with treatment.
That's so important with goingforward with most relationships
(38:14):
and partnerships you have inlife.
Don't start me, John.
It's it's it's being open, it'sbeing honest.
SPEAKER_02 (38:22):
Have you stayed married for 35 years?
SPEAKER_04 (38:24):
You gotta be honest.
Yes, yesterday was ouranniversary.
We were married 35 years.
And that is the only way, thankyou.
That is the only way you can dothat, is to be open and to be
honest.
But I have to tell you this fourout of four people in my
immediate family have a bleedingdisorder.
(38:47):
My husband was 49 when helearned he had factor five
lighting.
I was in my mid-30s.
My children are blessed to knowbecause we went through genetic
testing.
If we had not had thatopportunity, then I'm afraid
they would have been like theirparents.
(39:09):
If they lived far down the roadlearning they had a rare
bleeding disorder.
Now, the thing with that is, isin a country where there's so
much resource, that should notbe.
For our women who are diagnosedin this country, on an average,
not giving a specific diagnosis,whether it's Bon Willebrands or
(39:31):
whether it's um factor seven orwhether it's uh hemophilia eight
or nine, not giving thespecific.
But on average, women are notdiagnosed until 16 years out.
It was double the time formyself based on so many other
things I told you that I thinkcontributed to that.
That should not be.
SPEAKER_02 (39:52):
That's right.
SPEAKER_04 (39:53):
So every year I go to the HFM conference for women
and teen girls in this nation.
And I speak and I advocate and Ishare with those ladies how
important it is for them toadvocate for themselves.
We can't be the mothers of thesesons, the wives of these
husbands and all of that andthese teens and not ourselves.
(40:16):
That's right.
Something going on in our body.
And no matter how many times thepeople tell you no, like they
told me no, I was making it up,I was dismissed, it was not
true, it was not so, that wasnot happening to me.
You go back and you tell them,yes, it is, and you keep finding
a new clinician or anotherperson to tell until someone is
(40:36):
willing to help you helpyourself.
I'm passionate about thatbecause of my life experience.
But I would not be on thetrajectory I'm on had not I
learned I had a bleedingdisorder in my mid-30s.
And I would not be the globalpatient advocate I am now.
Traveling all over the world inSeptember, I'll be speaking in
(40:58):
uh Lisbon, Portugal at a healthequity conference.
And then after that, I'll bespeaking at uh in the London at
I think it's called the BHAHouse to the Lords of Parliament
and other individuals.
It's so important that we hearpeople when they tell us that
there are gaps in the healthcare system, regardless of what
(41:18):
country you lived in.
That's right.
It's so important that we meettheir needs with the social
determinants of health so theycan access care.
Yes.
SPEAKER_02 (41:28):
Yes.
SPEAKER_04 (41:29):
This is a part of our health journey.
One can't have a good quality oflife without health care.
SPEAKER_02 (41:40):
That's right.
SPEAKER_04 (41:41):
And to have health care, you have to care.
It has to be compassion.
SPEAKER_02 (41:46):
That's so good.
That's so good.
Oh, Connie.
So much to unpack there.
I want to talk about yourtreatment because at a certain
point, you start to get to aplace where in your own journey
of this, you start to get to aplace where you are able to
access treatment.
SPEAKER_04 (42:05):
Yep.
SPEAKER_02 (42:05):
How how did that change your life?
SPEAKER_04 (42:08):
That changed the game because I had the first
male doctor, like I told you,didn't think that uh
prophylactis treatment wassomething that I needed, but I
knew that it was.
And so I had to go on and findanother hematologist that
understood my symptomology,understood my needs, and
understood that, okay, she'sgoing to need this script for
(42:29):
prophylactic treatment so thatshe can get the medicine she
needs so she can have a betterquality of life.
And that took place.
But it was not without an uphillbattle in advocating for myself.
But I'm so glad, so thankful,and so grateful that I did
because I think it wasnecessary.
SPEAKER_02 (42:51):
Did you have challenges with insurance
pushing back?
SPEAKER_04 (42:54):
Did you have challenges with the first level
of challenge came from theactual hematologist, the doctor
that I saw, and then I had to goand find a new one.
Then the next challenge camefrom who would allow patients'
assistance programs to help meat that time in 2015 when I
(43:14):
needed dire help with paying formy medication.
And I was the type of person, Iam the type of person, that I'm
gonna get the insurance companyon the phone, the benefits
coordinator for the individualswhere I'm gonna get the
medication for on the phone, andI'm gonna get, because my
(43:37):
husband is a veteran, theveterans benefits administrator
on the phone.
But I know how to access and dothat.
Not everybody knows how to dothat, but they still deserve
access to insurance and care.
But after getting all theseindividuals on the phone and
making certain that all thediagnostic codes and everything
was in that needed to be, and mymedical necessity statements
(43:58):
were in, I was able to accessthe medication that I need.
Wow.
And they were able to allowcharitable organizations to be
charitable so that I could getthe medication.
Because when you're talkingabout medication that's$300,000
a year, I don't have that out ofpocket cost, and I don't know
that many people that do.
Right.
(44:18):
So the assistance was necessary.
SPEAKER_02 (44:21):
Wow.
And that's that's its own.
I mean, this is so many thingsto talk about within the the
scope of being able to justaccess medication in general for
high cost medications.
And the fact that you had to beable to coordinate all of that,
you have to really become thisis when we talk about being your
own advocate, you really have toeducate yourself on something
(44:44):
that most of us were not trainedto do.
We weren't prepared for this.
And so it's like, how do you,how do you, you know, I mean I
love your I love your example ofjust getting everybody on the
phone at the same time.
We're gonna do the what do theycall it, a party line when we're
you know, it's like you know,it's like get everybody on
there.
(45:04):
And and uh, you know, I heardsomebody say one time that, you
know, the best way to to uh toto act, you know, to get
something to be done is to actwith a lot of confidence and act
like you know what you'retalking about.
By the time they figure out thatyou don't know what you're
talking about, they're gonna bealready in motion so much so
they just want to get it done,you know.
So there's a certain measure ofthat confidence that you have
(45:24):
that I'm sure you were justlike, we're gonna do this and
we're gonna be a team and we'regonna make it work, right?
SPEAKER_04 (45:30):
Exactly.
Our health depends on it, youknow.
As people living with bleedingdisorders, we can't afford to do
life almost any other way,really.
SPEAKER_02 (45:40):
That's so true.
SPEAKER_04 (45:41):
Have a good quality of life.
We cannot.
SPEAKER_02 (45:43):
You know, you mentioned earlier about being a
global advocate, and you are, ifI've ever seen one, you have
spoken at uh, you know, theNational Organization for Rare
Disease for NBDF, you've spokenfor HFA, you've spoken for HFN,
you've spoken for all thesedifferent places all over the
place.
You have the most uh you knowrigorous speaking schedule, and
(46:04):
and uh and so it is reallybeautiful to see you out there
and and advocating for ourcommunity.
When you look at people andespecially women with bleeding
disorders, who are still notbeing, you said it earlier, 16
years on average across allbleeding disorders.
16 years, and and I believe, ifI'm not mistaken, that statistic
(46:26):
is from the CDC that shows thatit's actually from the first
evidence of a bleed.
So, so there's a there it's it'san activity of bleeding that
occurs and it still takes 16years longer than it should.
Um, I believe the average age isstill around 35 or 32 years old,
somewhere in there for women aswell, right?
SPEAKER_04 (46:46):
And for every dollar spent on a male with a bleeding
disorder, only 25 cents goes tofemales.
SPEAKER_02 (46:57):
And women's health in general is this way too.
I mean, I think it's interestingto note that women's health in
general is it it is already, mendo get more timely responses.
And it's really unfortunate.
And at the same time, what canwe do as a community to share
(47:17):
our story, to share ourexperiences, to share our
journey?
What can we do as a populationof people living with rare
diseases do to try to createchange in that way?
SPEAKER_04 (47:30):
We're gonna have to be on the front lines.
Our stories are no longer ours.
They have to be told.
We have to walk the halls ofCongress.
We have to share our stories, wehave to knock on doors at the
state level, at the federallevel, and if you're placed in
trajectory like myself globally,you have to let people know
(47:53):
there are real people behindthese evidence-based data and
numbers.
SPEAKER_02 (47:59):
It's not just a data point, it's a person.
SPEAKER_04 (48:01):
It's a person.
It's a person.
And you know, I matter, youmatter, we matter.
We have loved ones.
SPEAKER_00 (48:07):
They're counting on us.
SPEAKER_04 (48:09):
So we have to go forth and do that.
That's one of the things we haveto do.
Another one of the things wehave to do, like I said, is we
have to get into these academicsettings and these medical
schools, and we have to shareour stories there too.
Before these practitioners andthese clinicians get out into
practice, we have to talk withthem, share with them, let them
(48:30):
know that besides what they'velearned in the book, this is
also happening to individuals.
This is happening, and it may bedifferent for John and Susie.
We have to be in person, peoplefacing, sharing our stories.
Um, and I would think the nextthing we have to do is the third
(48:51):
thing, we have to actuallyeducate and encourage and uplift
one another to keep going, youknow, to keep going, to keep
telling your story, to keepbeing an advocate for yourself
and your family members, and touh never give up.
SPEAKER_02 (49:11):
I always say that there's uh three people at the
seat of a decision of getting amedication or getting a
treatment right.
There is the physician who hasto write the script, that kind
of is a big, big role,obviously.
Um there is the organizationthat's gonna pay for it, which
is the insurance company, that'san important person at the seat
(49:34):
of the table.
But a third of the equation, athird of the voices, if you
will, at the point of decisionof getting treatment is the
person living with the disorder.
And I think so often we think ofourselves as the leftovers, we
(49:55):
think of ourselves as the thelowest priority.
In essence, neither one of thoseother parties, independent of
themselves, can have anytransaction going on.
There is no medication, there isno, there is there is nothing
happening, but it's the patientthat's at really at the center
of the equation.
(50:16):
And I think I've said for a longtime, I really believe if
patients really understood thepower that we have to be able to
speak up for ourselves, but alsocollectively as a community to
come together to really voicewhat our needs are and and
really assert our influence, ifyou will, into the conversation.
(50:36):
Because at the end of the day, adoctor can make a
recommendation, but he's justpracticing.
He or her is just practicing.
They're making a recommendation.
That's what she's that he or sheis doing.
Exactly.
And they're also really at themercy of making certain that
somebody pays for that abilityto happen, which is the
insurance company, that'simportant.
Um, unfortunately, I thinkinsurance companies have too
(50:59):
much to say these days.
They're influencing limitedformularies with only a few
drugs, they're in influencingwhich doctors to see nowadays.
And don't get me started onPBMs, because we go there all
day long too.
But I think at the end of theday, if we understood our voice
and how much influence that wecould have if we really got
(51:20):
organized.
And the the truth is, is that Ithink as a as a as a patient
population, just in general, andagain, I'm speaking in very
generic terms cross-rarediseases as a whole, or any
chronic illness for that matter,it doesn't even have to be rare.
But we're disorganized and wedon't have nearly the financial
backing.
Most of us are not going to haveanywhere near the money that an
(51:43):
insurance company has, or someother company has to lobby
against this.
So the progress is reallyincumbent upon our passion and
our directive.
And it starts with winning thelittle battles along the way for
yourself and your family.
But I think the next phase isthat once you start to win some
of those battles and youcollectively get together and
you share experiences with oneanother and you realize it in a
sense of community, then we havea collective voice that has the
(52:07):
opportunity to create realchange.
But it takes us gettingorganized, focused, and
determined.
And without that, I don't thinkprogress will ever happen.
SPEAKER_04 (52:17):
But we have to harness the power of our voices
and our experiences.
And we have to, we have to goforward and tell our stories.
And we have to say, listen,Company A, I use your products.
Several of us, especially wewomen and girls in this
community, we use so much ofyour products.
(52:39):
Why are you not supporting ourprogramming?
We have to use the power thatyou were just speaking of, of
our with our voices, andcollectively come together and
say, if we're using product Afrom Company A, then we need
your support with our programsthat help us not just survive,
(53:02):
but thrive.
SPEAKER_02 (53:03):
Yes.
Yes.
Yes.
It's so frustrating thattechnology exists to solve these
problems.
And so often so many peoplesuffer silently because they
can't even get to the solutionsthat already exist.
I think that it is the fact thatwe raise our voices and share
our stories togethercollectively that actually helps
(53:24):
to move that into a place ofprogress instead of stagnation.
And I and I I personally am soinspired by your story and the
work that you're doing tocontinue to be brave and and the
courage that it takes for you tocontinue to stand on the stages
that you stand on to speak upfor women and leveraging your
(53:46):
story to do that.
I mean, you're using resourcesthat that were tragedy after
tragedy after circumstances thatshould never have taken place,
and you're turning it intosomething that's really
beautiful.
It's truly a story from beauty,from from ashes to beauty.
And I really am so thankful toknow you.
(54:06):
I'm so thankful to watch you.
I I am inspired by your journey.
And um, I really believe in inso many regards, it's it's your
story and your journey that isis really providing hope for a
whole community of women andgirls out there that just that
you have overcome some bigbattles that some women will
(54:29):
never have to overcome.
There's so much further to goand so much progress that needs
to be made.
And I know I'm committed tothat, you're committed to that.
I know hope as an organizationis committed to that.
I know as a community we'recommitted to that.
And I don't think that I thinkit's gonna, you know, take some
time and determination andresilience and all of the things
that you embody.
(54:50):
But together, as we link arms,just like we have in this
conversation, I think our futureis brighter tomorrow than it was
yesterday.
And I think we have the abilityto be able to do great things
for each other and for ourselvesas we continue to move forward.
SPEAKER_04 (55:05):
Thank you so much for saying that.
Thank you so much.
That means that means a wholelot to me.
You know, I'll know Jonathanthat I've done okay in this
world.
When I can look at it and yourdaughter, and their daughter,
and their daughter.
(55:32):
I don't know that I've done allright in this world.
When the little girl looks inthe mirror and feel the way that
I felt scared, anxious, we'reall human beings.
(55:59):
We can be kind, we can listen toeach other, and we can take
stock in what is shared.
And then we can becompassionate, not just
empathetic, but compassionate.
The difference in empathy andcompassion is compassion wants
to alleviate the suffering, soit acts.
(56:20):
Empathy says, I hear you.
Okay, I feel you.
I know what it is to walk a milein your shoes, but compassion
says, let me give you a smile, apat on the shoulder to see what
I can do to help you.
So beautiful.
That's what I want.
SPEAKER_02 (56:39):
We are doing it, and um I'm happy to be uh part of
your fan club, and I lookforward to seeing so much more
happen, and uh I certainly forlook forward to being able to
link arms and help even morepeople that hopefully you're
watching this story today andgetting inspired already, like I
have been, but also, like yousaid, laying the groundwork for
(57:02):
generations to come so thatothers won't have to fight the
same battles that you fought.
The ground that you have hadvictory over in your journey and
in your life, I believe, haslaid the foundation for the next
generation to stand upon.
And for that, I'm supergrateful.
Thank you so much, Connie.
SPEAKER_04 (57:20):
Thank you.
And hopefully, ladies and teens,we'll see you out there at the
Hulk conference in November.
Hopefully, I'll be there.
SPEAKER_02 (57:28):
Yes.
Yes.
Awesome.
Thank you so much for joining mefor this conversation today.
Please, please, please continueto share this episode with your
friends and family so that noone feels alone.
Thank you so much for listeningto this conversation today.
I hope it inspired you and Ihope that you have a chance to
(57:49):
be able to share this episodewith your friends and family.
If you haven't already, pleasemake sure that you like and
subscribe.
It really helps the algorithmout to help us be able to get
this information in front ofmore people.
And also, I want to say aspecial thank you to our episode
sponsor, Janentec, forsponsoring this content and more
like it.
I certainly hope that thisepisode helps you and your
(58:09):
family in your journey as youuncover the challenges and find
solutions for sticking togetherand advocating together.
I hope to see you in the nextone.
Take care.
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The Burden
The Burden is a documentary series that takes listeners into the hidden places where justice is done (and undone). It dives deep into the lives of heroes and villains. And it focuses a spotlight on those who triumph even when the odds are against them. Season 5 - The Burden: Death & Deceit in Alliance On April Fools Day 1999, 26-year-old Yvonne Layne was found murdered in her Alliance, Ohio home. David Thorne, her ex-boyfriend and father of one of her children, was instantly a suspect. Another young man admitted to the murder, and David breathed a sigh of relief, until the confessed murderer fingered David; “He paid me to do it.” David was sentenced to life without parole. Two decades later, Pulitzer winner and podcast host, Maggie Freleng (Bone Valley Season 3: Graves County, Wrongful Conviction, Suave) launched a “live” investigation into David's conviction alongside Jason Baldwin (himself wrongfully convicted as a member of the West Memphis Three). Maggie had come to believe that the entire investigation of David was botched by the tiny local police department, or worse, covered up the real killer. Was Maggie correct? Was David’s claim of innocence credible? In Death and Deceit in Alliance, Maggie recounts the case that launched her career, and ultimately, “broke” her.” The results will shock the listener and reduce Maggie to tears and self-doubt. This is not your typical wrongful conviction story. In fact, it turns the genre on its head. It asks the question: What if our champions are foolish? Season 4 - The Burden: Get the Money and Run “Trying to murder my father, this was the thing that put me on the path.” That’s Joe Loya and that path was bank robbery. Bank, bank, bank, bank, bank. In season 4 of The Burden: Get the Money and Run, we hear from Joe who was once the most prolific bank robber in Southern California, and beyond. He used disguises, body doubles, proxies. He leaped over counters, grabbed the money and ran. Even as the FBI was closing in. It was a showdown between a daring bank robber, and a patient FBI agent. Joe was no ordinary bank robber. He was bright, articulate, charismatic, and driven by a dark rage that he summoned up at will. In seven episodes, Joe tells all: the what, the how… and the why. Including why he tried to murder his father. Season 3 - The Burden: Avenger Miriam Lewin is one of Argentina’s leading journalists today. At 19 years old, she was kidnapped off the streets of Buenos Aires for her political activism and thrown into a concentration camp. Thousands of her fellow inmates were executed, tossed alive from a cargo plane into the ocean. Miriam, along with a handful of others, will survive the camp. Then as a journalist, she will wage a decades long campaign to bring her tormentors to justice. Avenger is about one woman’s triumphant battle against unbelievable odds to survive torture, claim justice for the crimes done against her and others like her, and change the future of her country. Season 2 - The Burden: Empire on Blood Empire on Blood is set in the Bronx, NY, in the early 90s, when two young drug dealers ruled an intersection known as “The Corner on Blood.” The boss, Calvin Buari, lived large. He and a protege swore they would build an empire on blood. Then the relationship frayed and the protege accused Calvin of a double homicide which he claimed he didn’t do. But did he? Award-winning journalist Steve Fishman spent seven years to answer that question. This is the story of one man’s last chance to overturn his life sentence. He may prevail, but someone’s gotta pay. The Burden: Empire on Blood is the director’s cut of the true crime classic which reached #1 on the charts when it was first released half a dozen years ago. Season 1 - The Burden In the 1990s, Detective Louis N. Scarcella was legendary. In a city overrun by violent crime, he cracked the toughest cases and put away the worst criminals. “The Hulk” was his nickname. Then the story changed. Scarcella ran into a group of convicted murderers who all say they are innocent. They turned themselves into jailhouse-lawyers and in prison founded a lway firm. When they realized Scarcella helped put many of them away, they set their sights on taking him down. And with the help of a NY Times reporter they have a chance. For years, Scarcella insisted he did nothing wrong. But that’s all he’d say. Until we tracked Scarcella to a sauna in a Russian bathhouse, where he started to talk..and talk and talk. “The guilty have gone free,” he whispered. And then agreed to take us into the belly of the beast. Welcome to The Burden.